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“What does it mean to be human, at this time, in this country? I believe it means practicing a radical generosity and empathy, especially when it’s a struggle. You must look around in the soft darkness of your waking life, which is the partner of your dream life. You must understand that accompanying you always is your animal, primal, complicated, desire-driven, calm but desperate, brutal and brilliant self, blinking and breathing gently in the dark, waiting for you to let in the light.” –Emily Rapp, “Someone to Hold Me“

Early Friday morning my friend and mentor Emily Rapp lost her two-year-old son, Ronan Louis. At just ten months Ronan was diagnosed with Tay-Sachs, a genetic disorder that is always fatal. I wrote to Emily shortly after Ronan’s diagnosis. I searched endlessly for words, knowing that sometimes there simply are none. Finally I simply wrote that nothing I could say hadn’t already been said by so many others, and that there are no words anyway, nothing anyone could do say or do would take the pain away, but I’m sorry. So very, very sorry. What I really felt though, was a need to burst into tears and cry out I can’t imagine your pain I hurt so badly for you and am here for you and want desperately to do something, anything, to help, but I’m not sure how well I communicated that. I wanted to somehow take some of her pain away, to cry with her, anything. But this was her son, her baby dying in front of her eyes, her pain – and I wondered how I could even begin to understand what she was going through, particularly because I don’t have any children of my own.

Sometimes I feel other people’s pain so acutely it overwhelms me. I’m not one who can hide my emotion, and am not particularly interested in doing so anyway, but do recognize that many people are not comfortable letting any feelings, let alone grief, seep out anywhere other than privately. And I know from experience that often others don’t know how to respond or how to take someone who does reveal themselves that way. I tear up all the time, over books, movies, songs, sometimes not even knowing where the tears came from, or what they’re for. But usually my tears are for other people, many whom I’ve never met, and often for animals.

On occasion, my teary-eyed moments have been met with curious expressions by people who, it would seem perceive the extent of my emotion as “inappropriate” to whatever precipitated it. I’ve been told “You’re just, you know, hypersensitive,” or asked “Don’t you think you’re overreacting, just a little?” Sometimes these perceptions have led me to question myself, and stifle even brief surges of emotion, saving them for private moments, when I’m more comfortable letting go and simply feeling what I feel, whoever, or whatever, that emotion is for.

But this feels wrong, is wrong, and what I should really question myself about, if anything, is why I would keep compassion to myself. This is tantamount to hiding the fact that you care about someone, or something. As if we could be too compassionate, or treat others too kindly.

The more I’ve reflected on it, the more I find this absurd, this notion of over-empathizing.

As if we could measure empathy.

As if we should.

Not a day has passed that Ronan and his family haven’t been in my thoughts. After I wrote to her, Emily welcomed me to visit her in Santa Fe. I’d love to, and would have already, were it financially feasible. Many times I’ve imagined meeting Ronan, feeling his soft hand wrap around my fingers and smelling his hair and looking into those eyes, with his beautiful, long lashes. I wanted so badly to get out there and meet him and deeply regret not having been able to. But physically meeting someone, knowing them personally, is not a prerequisite to being deeply moved by them.

Reading about their journey has allowed me to look into their lives and learn about how Tay-Sachs affected Ronan’s body, to gain an understanding, as much as is possible for a person who has not lived what this family has lived, of what it means to watch a life you were meant to nurture slipping out of your reach, knowing it will be gone. It has allowed me to imagine how it would feel when others innocently asked about my child, and wondering how I would answer, to only attempt to fathom the vast and continually fluctuating range of emotions, and being forced to make impossible decisions, that should be required of no one. It has enabled me to empathize with a mother losing her child, though I have no children of my own, and to empathize with Ronan and his father and even other parents whom I’ve never met, who lose their children to this devastating disease. If you have read Emily’s words, you have gained an understanding of the grief and the anguish unique to parents whose children suffer and die from Tay-Sachs.

And if you’ve read her blog, you’ve also seen that not everyone is going to understand her grief, or agree with this particular way of managing it. Some have criticized, some have judged. This makes even less sense to me than criticizing another’s level of empathy: how you could criticize anyone wading through the current of grief is something I will never understand.

As if grief could be measured, weighed.

As if it should.

Grief is a wild card. There is no way to predict how it will hit you and no right or wrong way to deal with it. We will all know it at some point, and can only get through it however we may need to at that point in our lives. Some will find support with family, friends, or groups, some turn to religion, others will drown it out in a bottle, and writers will write through it.

As she watched her son progressively losing function, knowing he was dying, knowing there was no way to save him, Emily emptied her grief onto the page, sharing her son and their experience with the world in her blog, Little Seal. The strength she needed to nurse her son to his premature death, is beyond my comprehension. The courage it had to take to let the world in and experience this with her.

I believe that we read – and we write – to know that we’re not alone, as much as to let others know that they are not alone. We read and we write to understand each other, to understand ourselves. Empathy is essential.

“Empathy is the only human superpower – it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke social change.” – Elizabeth Thomas

I’ve read and cried through every beautifully-written post, grieving for her family, for all the families who have watched their children suffer and die, unable to prevent any of it. Undoubtedly many of you, like myself, were unfamiliar with the disease which, due to its being rare, does not get the attention that more prevalent illnesses do. But from Emily’s willingness to share Ronan’s story in her blog, and in her book, The Still Point of the Turning World, which comes out in just a few weeks, will come understanding. Empathy. Awareness. And with those things, comes hope.

Today, as I write this, my heart aches with a profound sadness. Some sadness for those who would limit their empathy or try to control grief, holding tightly to the notion these should be experienced the same way, to the same degree, by everyone. But mostly I am sad for Emily, and for Ronan. My tears are flowing freely, my love and empathy expanding boundlessly around me, and I hope they reach my friend, and her family.

Sometimes we are touched closely, by people far away. Sometimes we know them intimately, other times we are acquainted to a degree, but sometimes we don’t know them at all. Sometimes we find them along the way, similar circumstances drawing us together, the struggles we share pointing us toward each other so that we are not alone, or do not get lost trying to find our way on a journey that offers none of us a road map. Other times our experiences differ widely, and we may know little or nothing of what another is living, how it must be for them.

Anaїs Nin once wrote, “My ideas usually come not at my desk writing, but in the midst of living.” Ideas don’t wait to come until you’re sitting, ready to write, so I jot down a lot of notes to return to when there is time. If something in the news hits me I spit out my immediate reaction on the page then stop, and return to it later, after I’ve calmed down and can approach it a little more level-headed. When I was an editorial intern I remember reading a few essays that were insightful and necessary and relevant…and too angry to be effective. They reminded me that no matter how passionate I am about a subject, if I don’t step back, let it breathe, check my emotions and revise, my words will read as nothing more than an irritating rant.

This is what’s hard for me about blogging. The very nature of it demands letting go of infinite revision. Some bloggers don’t revise their posts at all and just sit down, write it, and up it goes. Others write short essays, revise them a little, and up they go. We each need to find our own balance, I suppose, which might depend on the purpose of each individual blog. I don’t want to spit out a rant as quickly as possible for the simple sake of posting, only to have a blog comprised of spontaneous emotional outbursts that weren’t given enough time or thought. But I also need to post frequently, regularly, and silence my inner perfectionist to do so. I’ve let too much time pass without posting while waiting for the muse to come and say “This is how it should be done.”

I have to “feel” it!

Recently I was watching Robert DeNiro, (because I watch him every chance possible) in an interview on Inside The Actor’s Studio. He talked about how he “was afraid to make a move,” when preparing for a scene and felt like he had to go through some whole complicated creative process to get into the character and scene, and would hesitate, thinking “I have to feel it, I’m gonna have to do this…” A teacher told him simply, “At the end of the day you’ve got to get up and do it. And the sooner you get to knowing that you’ve got to get up and do it, the quicker you’ll do it.” Once he just jumped in he realized he hadn’t needed to pamper himself or go through this or that first: “You’d just arrive there, you’d be there, believe it or not.”

Okay. Simple enough. Just sit down and write. I’ve got a great idea and all the emotion in the world to fuel the writing, and can get myself to sit down and just write it. But I can’t always stop there, and do sometimes have to go full speed ahead, take a breather, then come back. What I’m finding though, is that something lights a fire under me so I sit down and spit out my rant. Then I back off to let out some emotion and let in (hopefully) some rationality…and then while I’m letting it brew, I discover someone else has written something very similar, or taken an idea similar to one I had and was sitting on, but they actually did something with it. Which, of course, elicits another annoying voice that says “Well, now you’ve done it. You’ve waited and someone else wrote it and now you can’t, lest it look like you are taking someone else’s ideas due to the lack of your own.” Great. Allow me a moment, if you will, to respond to that voice: Shut the hell up.

A few nights ago I called my friend L to get her opinion on a post I was writing. News of Representative Akin’s comments on “legitimate rape” was spreading across websites like a trojan horse, and though I often remain silent on the idiotic things politicians say, this was an immediate and ferocious blast of isolated thunder for me; my fingers could hardly keep up with my thoughts. It seems a couple people misunderstand the word “empathy,” so I wanted to demonstrate how they might come to better understand it, but was worried that it might be a little graphic for a blog post, so I read it to her to see what she thought. Then today I get online and see an article responding to the same thing, with a couple paragraphs written the same way I wrote mine. And all is lost. Surely I can’t write it like that now, when someone has already done it the same way.

I fired off one of those “I can’t believe this!” texts to my friend, who has encouraged me to finish and post it anyway. And I will. For one thing, there is a similarity, but so what? We argue two different points, both valid. If we all stopped writing essays and books and songs and films because someone had already tackled that subject before or written it that same way before, we’d be missing out on a lot of good work. Anaїs Nin also wrote that “It is the function of art to renew our perception. What we are familiar with we cease to see. The writer shakes up the familiar scene, and, as if by magic, we see a new meaning in it.” So someone wrote something the way I wanted to and they beat me to it. So what. I’m learning my writing needs distance and time – just not too much.

I’m going to put my that little insecurity to bed, finish the piece, and post it soon.

Like this:

Laura asked me to do a blog in conjunction with hers – a mother-daughter blog. And I wanted to. I love being a part of her life. We talk about books and ideas. We often like spending our time, what little of it there is that’s free, doing the same kinds of things: going to movies, reading, writing, and running around Cleveland tracking down Robert DeNiro – don’t ask. We share our writing from time to time and writing a blog together would be ideal.

Her topic of choice for this moment in time was going to be volunteering. I’d made a lot of notes about that topic already because a lot of my friends volunteer, and the sheer number of things people do as volunteers simply amazed me. I’d planned to one day compile their stories in a collection about local volunteers, what they do, and how they got into volunteer work. I admire and respect others who volunteer their time, but Laura actually wanted me to do some volunteer work so we could write about our experiences from mother/daughter perspectives. I didn’t have time for that kind of consistent commitment.

Nope. Didn’t want to do that. It bothered me to reject this offer but, no, I couldn’t make that kind of commitment right now.

I could hear the disappointment in her voice. I suggested a different topic but she was committed to this one. The whole thing made me so uncomfortable, I didn’t even want to talk about it – and I couldn’t figure out why.

I’d been a ‘formal’ volunteer long ago, working “for free” as a Nursing Home Ombudsman. My grandmother had recently died and I missed her. Being around other grandmothers, well, it seemed like something I needed. My commitment was for a year – and by the time that year had ended, so had my outlook on many things.

I discovered this is not something I can do on a regular basis. I can do this sporadically, but I can not do this kind of really personal thing on a regular basis because I can’t handle it. Laura can’t watch commercials for the Humane Society or the ASPCA. I can’t watch the elderly die by degrees. Can’t watch them waste away as their friends leave them. Can’t bare to see the mirrored rejection of their relatives in their pleading eyes. My grandmother was never in this position, and it hadn’t occurred to me that this could be the end result of life once engaged in the business of living.

I wasn’t prepared for elderly residents who were needier than I could have ever imagined. Mostly in wheelchairs, they sat randomly in the hallways and around the nurses’ stations. They looked as if they’d been abandoned in the middle of getting from one place to another while some nurse or aide rushed off to attend to someone else. Some were tied to their chairs, their fragile wrists bound with various materials. Their heads so often bent toward the floor. I rarely saw visitors, though I came at varying times and on different days.

Every time I came it was the same. As I walked down the hall to see those individuals I was supposed to interview, the random army of squatters would reach for my hand, begging for attention. A word or two. An exchange maybe, no matter how brief, that might constitute conversation. I couldn’t say no – to any of them. Each time I stooped down to make eye contact and converse, however briefly, I’d be beckoned by someone else. As I went from one to the next, I not only took part of each person with me but also left some of myself behind.

There were more of them and less of me with every visit I made that year.

A depression slowly made its way through my limbs. It went home with me and took up a place at my table. It slept next to me in bed, and accompanied me to the university and sat at the desk next to mine. It worked alongside me at my regular job. It stayed with me day and night until there was almost no happy space left for my children.

When I started the program, I’d planned on doing it for a long time. I left after one year – when my initial commitment was over.

Laura’s suggestion that I become a volunteer made me hesitate, then made me question my hesitation.

Laura remembers feeling guilty because she was healthy and others in the hospital were not. Like her, I feel guilt, too, but mine stems from not doing more, not doing what others do.

But what’s the best way to do good? We each have gifts to offer and they’re not all the same. That’s the beauty of our individuality. Everyone’s good at something; we just have to find out what that something is.

My husband tells me I give too much of myself to every cause I become involved in, even peripherally. But I don’t feel like I’m giving anything at all; I don’t feel like I’m doing anything at all. And that, I think, is where the guilt comes in. He says I give too much of myself to the people I meet, but I just can’t seem to separate myself from people in general. I wish I could separate sympathy from empathy. It’s the empathy that takes a toll on me. I can feel what others feel, almost put myself right into their shoes (tennis shoes, hiking boots, standard heels, whatever). At the same time, I wouldn’t want it any other way. Feeling is better than not feeling.

But like Laura said, it takes a toll that extracts a heavy personal cost.

Maybe it’s because when I was growing up, I felt so isolated and alone most of the time, and no one seemed to care. No one asked. No one listened. If someone had, it would have made a huge difference in my life. It’s the difference I want to make in others’ lives.

I do care. Deeply. I ask because I care. I listen so others know I’ve heard them. And sometimes that’s what people need most: to be validated; to feel less alone. I do what I can whenever and wherever the opportunity presents itself.

My grandmother was lonely too, and that’s something I only realized after the fact. She had all of us, but she was still growing older, alone in many ways. I hadn’t really understood that before all this.

Guilt? Yes. That’s what it was I’d been feeling all along. Guilt for not volunteering as Laura suggested I do. Guilt for not doing something. Not doing what other people do.